Children of Mesh

Sunday May 10th is Mother’s Day in the U.S. and Canada and perhaps in other countries. I know that in Great Britain it is celebrated in March because I was born in England and when I married I had a mother-in-law in the U.S and a mother in England. I always remembered both regardless of the country I was living in at the time.

I have had five Mother’s Day’s since mesh was implanted in my body and my daughter has done her best to make them special even in simple ways. I have been grateful for every day I have been her mother and the fact that she tried hard to make any day special when I was not feeling well, is a tribute to the wonderful daughter she is.

But today I want to speak about what it is like being injured by mesh and how it feels on both sides, whether it is from a child’s point of view or from a mother’s. I want adult children to understand that pain and suffering often makes people angry and it is doubled when their lives are at a full stop because of these terrible implant products. Women don’t just have pain to deal with, they are often belittled by doctors when they go back to tell them of their pain that an implant has caused. They are rarely offered help or sympathy by a doctor when they point out what is going on in their bodies. Instead they are offered antidepressants, pain medication or many times nothing at all. They are often told that it is all in their heads and then shown the door and told they need mental help. I can’t tell you what it does to a woman’s psyche because unless you live it you will never understand. But I can tell you that women have told me that at times they are not nice to live with because of the amount of pain they are in and no one believes them.

One woman told me that when her child told her that she was not nice during the time she had mesh in her body, she was a little shocked. At that time it had been a year since her removal and she was doing better, so she said she was taking the time to make it up to her children and make amends. That is a really good mother who recognizes it is time to say “I am sorry”.

Mother’s don’t ever stop being mothers even when they are estranged from their adult or young children. I know young mothers who have lost custody because they cannot care for their children the way they used to after mesh is implanted and once divorce happens they find themselves alone and lost. I know some mothers have adult children who walked away from them because they don’t want to deal with a sick and angry mother. But I want those children to know that although it may seem like their anger was generated towards you, they are not angry with you at all. They are angry that they can’t be the mother they used to be and unwittingly, you feel the brunt of their anger.

Young children grow up with mesh injured women and it must be so difficult for them to understand and share their own pain with their friends. They may become isolated because they don’t want friends to go home with them to see their mother lying in bed all the time because they live in pain. If on pain medication a woman often slurs her words and the outside world will believe she is a drug addict or a drunk, when the fact is she has no choice to take something to try to enjoy her children, or do the chores she has to do. The problem is, many pain medications are addictive and cause other mental issues such as paranoia. It’s not an easy situation for any mother or her children and very difficult to understand when you can’t see the cause.

Adult children often bare the financial responsibility of trying to pay all the bills associated with real life and all the expenses of travel to have the mesh removed. This often causes resentment and less understanding of a situation that cannot be changed. Mesh takes control not the woman nor her loved ones.

A year ago I would think nothing of sharing a woman’s story when I believe she is living in pain and wants to get the mesh out of her body. But the whole fiasco with Jane Akre, Aaron Horton and Estelle Tasz caused me to rethink doing it ever again. To be used and lied to has been very tough on me but I still have empathy for women and their families who suffer from mesh complications. To honor all the women who suffer and cannot care properly for their young children and for their children I want them to know that I for one get it because I live it. I have spoken to women as young as twenty-one years old who had a hysterectomy and mesh was placed in their body, with disastrous results and the one thing they talk about is how much they want to get back to being a productive and caring Mom. Sadly many cannot earn money anymore and live on small disability payments and struggle financially along with their pain.

One woman’s fight for wellness

Today to help young mothers resolve their feelings and to recognize that what has happened to them is not their fault, I have permission to share the story of one mother who feels the same. She is a single Mum with a ten year old son, and finds it very sad to no longer be the Mum she once was. This blog will give you a little insight as to what she has been through and I am sure many of you will recognize and understand everything. First in green lettering, Suki tells a little about her surgery and what happened to her after it. Many of you will find similarities of your own story. But I want you to be aware of what this must have done to her son. She left home to have a simple operation and should have been home the next day. However that did not happen and you can imagine the mental anguish this child suffered. When she did come home, life had changed and she has been in a wheelchair ever since.

“I had unknown to me at the time, an Ethicon Gyncare TVT-O sling placed inside me in Sep 2013. I woke unable to move my left leg and in extreme pain.

5 months after the operation went wrong, and being dismissed by the hospital,  I found out that I had the Ethicon sling implanted as the “little bit of  tape and quick half hour procedure with a front prolapse – I had had the back prolapse operation the year before Nov 2012. (There is debate why they did it as 2 operations as they were aware both needed to be done and the front was the lesser of the 2) This I found out later was not a little bit of tape, but 22cm of plastic mesh.

I have suffered from 4 life threatening infections since the operation. 100,000 CFU/ml Enterococcus sp, staph aureus, staph epi and proteus – and was bed bound for 3 months and housebound for 6 months after surgery.

I remained in hospital a month after surgery, but was confused that they investigated everything they decided was wrong with me, except anything possibly relating to the first operation insisting this was nothing to do with that operation and refusing to even look into it.

My gait was 0/5 (after a month 1/5) I had zero sensation in the pelvic area and very limited sensation in the left leg. I still do not feel hot and cold well in either area. My left foot curled inwards uncontrollably, and was told this was a clear indication of damage on S2 – which I have confirmed later that they had evidence of a bugle/compression on S2. I also had urine retention and could not tell when I needed to go to the toilet.

After a month I had made ‘limited’ progress and could drag my leg with 2 crutches and just about make it up stairs. After 6 months I improved to a 3/5 gait – but was unable to cross my legs, open my thighs more than a few inches and suffered increasing pain, swollen lower leg & foot – purple/red mottled colouring first up to thigh, improving to lower leg and foot. I had a drop foot after short distances and wore a SAFO. The more I tried to walk the more the foot swelling and purple colouring. This is still true today. I have only been able to survive by using a bolster under my thighs and have long days lying down.”

Now I will share with you that although at times she wanted to, she never gave up. She researched and realized her best possible outcome was to come to the USA and have Dr. Raz remove it completely. Her son Jacob, his friends and wonderful new adult friends are doing everything possible to try to raise the money to get her out to UCLA from England. Yes a huge and daunting task. But they are working so hard to make it happen and I want to give them hope by writing this blog. First I am giving you the press release to read what they have done so far and that will explain what her children and wonderful friends will continue to do to change this woman’s life. When you read the press release you should understand that Gosport is on the south coast of Hampshire in England.

First there was a lot of preparation for this event and a lot of people made it happen with the emphasis on fun for the children. I think this is a marvelous idea as it makes the children feel important to help their mother and for one day they can forget their worries and just enjoy a day. I am told Jacob had a wonderful day and his very proud of his Mum.

Now, on this Mother’s Day I want women to understand what this journey is like through the eyes of a child whose mother is always sick and in pain, so I asked Suki to talk to Jacob and send it to me. This is it.

Jakob’s words of what it is like to have a Meshed up Mum
By Jakob Mann Age 10

“I remember mum had her TVT-O mesh operation the first day of Year 4. It was my first day at a new school.

It was difficult to go to school and then see mum in hospital, I just wanted to cuddle with my mum. I tried to help mum by thinking she was going to be ok, and by being good for everyone – but mostly I was hurting inside. I remember crying a lot because they kept on saying mum was coming home but she never did – it kinda made me feel a bit angry. I was angry at the NHS.

When mum came back home I felt extremely happy, I tried to help mum learn to walk again and I thought she was going to get better. When I saw mum wasn’t getting better, I found it stressful to cope and just watched youtube on my ipad all the time so I didn’t have to see what was happening at home.

At school I was sometimes sad and I made friends with Sunny & Morgan who were very encouraging and positive and helped me. Mrs Pompa was the best teacher ever, and sometimes a staff member sat with me when I was sad. Mr Bailey, the headmaster, distracted me at school by getting me to help him set up a minecraft club.

Mum & I were fairly happy & positive thinking mum was going to get better.

When we found out that it was the mesh that was stopping mum walking, and that she had to have another operation – that was very bad – I started not wanting to leave mum and didn’t want to go to school. I slept next to mum, and I cried a lot and wished I could make mums leg better. On my birthday, when I cut my cake, I wished mum’s leg would get better. When I wrote to Santa I asked for mum’s leg to get better – that’s how much I wanted my mum’s leg to get better.

Things got worse at school, but Mrs Pompa was very nice.

As we got closer to the operation date in October– I stared to worry something was going to happen to mum. I felt none of my friends & my new teacher understood what I was going through. I had to help mum pick up and carry things, I had to help with the wheelchair, and be quite grown up.

When my mum was in the London hospital 60 miles away and I could not see her for 2 weeks – I kinda felt lonely. When mum wasn’t coming home like they said she would after the week – I started to refuse to go to school and wanted to talk to mum and see her. I stopped going to all my activities, and stopped seeing my friends.

I started to feel excited that mum was going to get better, but when I came home from school every day and saw mum still could not get out of bed and it went on for 6 months, I started to feel depressed & bored because I wanted to be able to do all the things we used to do like cycle. I hated the NHS.

I remember mum had her TVT-O mesh operation the first day of Year 4. It was my first day at a new school.

It was difficult to go to school and then see mum in hospital, I just wanted to cuddle with my mum. I tried to help mum by thinking she was going to be ok, and by being good for everyone – but mostly I was hurting inside. I remember crying a lot because they kept on saying mum was coming home but she never did – it kinda made me feel a bit angry. I was angry at the NHS.

When mum came back home I felt extremely happy, I tried to help mum learn to walk again and I thought she was going to get better. When I saw mum wasn’t getting better, I found it stressful to cope and just watched youtube on my ipad all the time so I didn’t have to see what was happening at home.

At school I was sometimes sad and I made friends with Sunny & Morgan who were very encouraging and positive and helped me. Mrs Pompa was the best teacher ever, and sometimes a staff member sat with me when I was sad. Mr Bailey, the headmaster, distracted me at school by getting me to help him set up a minecraft club.

Mum & I were fairly happy & positive thinking mum was going to get better.

When we found out that it was the mesh that was stopping mum walking, and that she had to have another operation – that was very bad – I started not wanting to leave mum and didn’t want to go to school. I slept next to mum, and I cried a lot and wished I could make mums leg better. On my birthday, when I cut my cake, I wished mum’s leg would get better. When I wrote to Santa I asked for mum’s leg to get better – that’s how much I wanted my mum’s leg to get better.

Things got worse at school, but Mrs Pompa was very nice.

As we got closer to the operation date in October– I stared to worry something was going to happen to mum. I felt none of my friends & my new teacher understood what I was going through. I had to help mum pick up and carry things, I had to help with the wheelchair, and be quite grown up.

Jacob and his friends have done many things to raise money

When my mum was in the London hospital 60 miles away and I could not see her for 2 weeks – I kinda felt lonely. When mum wasn’t coming home like they said she would after the week – I started to refuse to go to school and wanted to talk to mum and see her. I stopped going to all my activities, and stopped seeing my friends.

I started to feel excited that mum was going to get better, but when I came home from school every day and saw mum still could not get out of bed and it went on for 6 months, I started to feel depressed & bored because I wanted to be able to do all the things we used to do like cycle. I hated the NHS.

The school started taking me to see a Senco teacher who helped me with my worries. I could put my name in a box if I had a worry and she would come and see me. I started to go to a group with her with 3 other children. We learnt about green thoughts and positive thoughts and how to be friends for life. My friend Morgan came with me. This sometimes made me feel better.

Morgan & I started talking about how we could make money to help mum. When mum started saying she was going to try and raise money to see a surgeon in America that could help her – I felt relieved.

Charlie and I were playing and I don’t know why we just wanted to do the video. We placed it on the table and just started talking. When Clare, Andy, Anna & Charlie started to think of ways to raise money, I felt very grateful. I started to think that mum might get better. This made me feel much happier.

I felt like everyone around us really cared for me and for mum, and understood what troubles we were going through and they really wanted to help mum get the operation in America. School Mum’s were organizing really fun things and all my friends were coming to support me and I thought that they were really thoughtful.

I was trying to think of what I could do to help and Clare suggested that I did a swim at lifeguarding. Everyone at lifeguarding supported me and Pam trained me. On the last day even though I was not well I swam 15 lengths of the 33m pool reaching my target of 525m.! I felt really good that I had achieved something that was helping mum.

It is extremely important to me that mum gets to America because I can’t live any longer with mum having a meshed up leg and I want to be able to do all the fun things we used to do like cycling, skiing, kayaking and travelling. I want to sit in the sunshine and see my mum healing and getting better…

Jakob asks his mum a question ” if you were to go back in time and stop this from happening would you?

Mum answers the question ” MMM this is a difficult one!”

Now the following message from Suki about how much she wished she could change things and I know this is how many of us have felt.

“I wished for many, many months that I had listened to my instinct on that fateful day, which was to cancel the operation as we had too many things going on that were positive in our lives such as Jakob had just started a new school.

Since the surgery I have felt angry, despair and it has been very painful and hard to deal with – but I have learnt much about myself and about others and about how the world really works from this. I learned that there is much that I missed when living the rat race and I feel it has made me a more understanding mum. This change in my life has shown me how important it is to be there for friends and be mindful of the things they are going through. It has taught me that above all when communities come together to support each other – there is nothing more powerful.

This has changed me and I can never be the same person again … I think it has mostly (!) made me a better person!! And that even at the hardest times my love for Jakob has never changed.

So no – I won’t change what has happened – but I may feel differently if things don’t work out with the happy ending we want. One thing is for sure – I am learning that I will find a way to enjoy life no matter what the outcome!! Jacob I will always love you and be your mum no matter what or how I am!

I asked Jakob the same question about if he could go back in time and he said that if he could change things, it would never have happened to me.

Through Jacobs’s eyes he has seen all the suffering this has caused his mother and for him time must have felt like it is standing still. Young children see the world through fast moving eyes with so many days to look forward to. However when a mother is so ill and in pain, the days are long and slow.

Now to understand what everyone has done so far to raise money and give the children a lovely time I will share with you the photos Suki sent to me.

And this lovely young girl by the name of Niamh is Jakob’s class mate who wanted to help him and raised £220 from a cake sale she organized everything!

The following is the press release about Fund Day event and will give you an idea of what to do if your children and friends want to raise money for you to get your surgery.

“Something amazing is happening in Alverstoke Village Gosport, as the parent, children and Alverstoke Junior school rally round an overwhelmed wheelchair bound supermum Suki Mann to raise funds for an urgent operation in the USA.

Suki suffered serious nerve damage with severe pain leaving the once outdoor and sporty 46 year old swimming instructor wheelchair bound after an operation to insert a mesh implant for pelvic organ prolapse went seriously wrong.

A Fun Day was held this weekend by mum’s from Alverstoke Jo Pearce & Lucy Fisher. Jo Pearce opened her home and garden to the public, with the Maclom Dent from the Gosport Rotary Club donating a marque and sound system. Alverstoke Junior School lent the urn and donated tea & coffee and advertised the event on their parent mail.

Jo & Lucy worked hard all week and the whole community came together to donate tables, bunting, and items such as toys, books & dvds to sell, as well as hundreds of items for the tombola, raffle and prizes.

With chocolate foundations flowing, bash a rat & horse racing games, face painting by Tara Creasey and hot dogs, cakes and drinks all round, the garden came to life at 11am on Saturday..

Children from the school, karate club, neighbours along the street and friends poured into the garden, with children spending not only their pocket money but their parent’s money too, all to help Suki Mann. One parent said they were just coming back from a haircut in the village and saw the sign, and pop in to support me, another parent new to the area said their son saw the flyer at Karate and wanted to come and support Jakob’s mum. Many more came from around the area, and many offered further support in the future.. Other parents said their children had asked them if they could come because they wanted to help Jakob & I.

To see how everyone in this small village came together to help Suki Mann get back on her feet, is something so amazing that words can’t describe.

In just 4 short hours the Fun Day garden fate raised £520 pounds with still at least another £200 of items to auction. Suki Mann became quite overwhelmed by all the support that tears streamed down her cheeks when the total was read out – like a pressure valve releasing as the thought of this opportunity to get back to health and not be disabled became ever closer, and the realization that it’s the fellow mum’s and Dad’s, staff and children of Alverstoke that have made this happen!

If you would like to help the Alverstoke community raise more funds for Suki Mann please donate on the GoFundMe website at http://www.gofundme.com/injured-by-mesh leaving a message or look out for further events and come down and support them.”

Old friends and often family members leave after a woman begins the journey of suffering because of mesh, but thankfully new friends bring light and hope.

This is Suki with her wonderful friend Clare who has helped her when she was down to rock bottom and felt there was no hope.

Taking a friend a piece of cake and sharing a few hours can be so important in an injured woman’s day. Clare is the friend who brought her and Jacob out of the depths of despair and has been tireless in fundraising to show that this is possible.

Suki wanted me to thank Caroline publically (here with son Oliver) who has been a wonderful friend and for the past twenty months has transported her own son Jacob to life guard classes because she has been unable to do it herself. I thank her too as without friends who care, children would miss out on the fun things they should be doing while they are young. Caroline is also doing an upcoming event in England to raise funds for Suki. You can read about it here

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Caroline with son Oliver

Suki has sometimes been so overwhelmed by the kindness of those who stepped forward to help her and the following letter was one she wrote to the school as a thank you for all their help.

“Dearest Julie,

I just wanted to say another thank you for the continued support from you, and all the Alverstoke Junior staff.

By being willing to advertise, and by leading the Urn and donating teas & coffees, Saturdays event went really well. So many parents & children turned up and all seemed to have great fun!

Then on Sunday Niamh in Jakob’s class did a cake fund raiser and with you allowing cakes to be sold on the monday at school, raised even more money…

I just want to say a massive thank you to all the parents & children at Alverstoke Juniors and so have just put together a few leaflets which if appropriate you could share on the parentmail.

Many many thanks …. The Portsmouth news ‘aboutmyarea’  ( hayleystorey@aboutmyarea.co.uk) said to send the press release today, so press release and photos sent… hoping they will put an article in the paper again soon.

Kind Regards

Suki Mann”

While suffering, Suki has not stayed quiet because she knows what it is like to live in a wheelchair after this surgery. In fact this picture was taken when she went to Scotland to testify before parliament, along with many other injured women. She is doing this not just for her son but for other sons who could stand to lose the mother they know as capable and caring. She is working to inform and change what is happening to women.

At the end of June this year, Jacob’s weekend brother Charlie, age eleven is now in training to run ten miles to raise funds for Suki and two other friends will be running five and two miles to raise money with him. Charlie’s sister Anna age fourteen is doing an eight hour karate Kata on the 17th of May in the hundred Akre woods, which is where the age old Winnie the Pooh stories are set. These children support Jacob and his mother in every way. In about three months I will do an update and share with you how the fund raising went because I want to give hope that raising this amount of money is possible if women reach out and ask for help. If you want to help and live in that area or are curious about where this is this link will take you there If you live in England, come along to Ashdown Forest on that day, bring a picnic and gives these kids and Suki some support.

To read stories about her fund raising events you can read the following two articles

http://www.scotsman.com/news/health/health-chief-mesh-implant-issues-not-widespread-1-3700715

http://www.aboutmyarea.co.uk/Hampshire/Portsmouth/PO6/News/Local-News/286003-Roller-A-Thon-Raises-Funds-to-Get-Suki-Back-on-her-Feet

Summary

Before I end this blog I know many women just read it and they do not realize that at the top of this blog are links things we have shared to try to help you raise funds for surgery and travel costs. The more your friends and family do to raise funds, the more likely you will receive more donations. I say this because just putting up a Gofundme account often doesn’t work, but when you meet others and tell them your story, they will know you are real and not just taking money without a real cause. I know women who sat in wheelchairs and met the public and shared what mesh has done to them. It truly is the best way, but only you can decide to become active and outspoken.

If there is one thing I have learned from this, it is you can’t change what you don’t acknowledge. It is a lesson in humility and the only way to move forward is to acknowledge what is going on with women’s health issues. You are part of change. If you have been reading this blog and are estranged from your child/children please reach out and try to change it. If you are an adult child and have a strained relationship with your mother, please reach out and try to change it. Mother’s Day is just a symbol but you can use it to fix what is broken. The process may be slow, but it doesn’t begin until you take the first step.

I will be having another quiet Mother’s Day at home with my daughter and I will be doing something I enjoy and she encourages me to do it. I used to make miniatures out of our shipping crates when she was a little girl and we lived overseas. It took away the loneliness of my husband working far away from home and kept my mind occupied. These days I am enjoying it because it removes me from all the sorrow and pain that is part of mesh. I share what I do with like minded people and that also gives me a purpose. When life changes you have to find something else to change with it. If not the anger stays in your heart and you can barely breathe. Please have an enjoyable day regardless of what you are dealing with and find a way to lessen the pain in your heart. It can be as bad as the pain in your body.

Happy Mother’s Day to you all!

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